Noah Nelson

SAVE THE DATE - 3rd Annual "FORE NOAH" Golf Tournament - Sunday, April 29th, 2007

               

Join us for the 3rd annual "FORE NOAH" Golf Tournament to benefit Neuroblastoma cancer research.

When: Sunday, April 29th @ 8:00 AM
Where: Longbow Golf Club, 5601 E. Longbow Parkway in Mesa (View Map)

Thanks to LONGBOW GOLF CLUB and other underwriters of the event, ALL PROCEEDS will go directly to the Children’s Neuroblastoma Cancer Foundation (CNCF). To find out more about the event and how you can participate, download the Registration Form below and follow the simple instructions.

Download fore_noah_registration_form_2007.doc

For more information contact us at [email protected]

A Few Things to Mention

Noah starts Day 1 of 7 with Radiation.  St. Joseph's Hospital receives high marks for their Radiation Oncology department and we feel we're in good hands with the drs and staff.  Noah is very relaxed about the whole thing and is ready to just "zone out with the iPod" while he receives his 2X daily dose.  Each treatment will be roughly 30 - 45 minutes.

We got word from the Fore Noah Golf Committee that the McNichols and the Longbow facility have graciously donated tee-times and their hospitality for a 2nd Annual Neuroblastoma tournament.  The date is set for Sunday, April 30, 2006.  Fabulous news!  Last year's event was so magical and we're thrilled to do it again.  All sponsors, participants and volunteers - get ready...we'll be giving more details shortly.  Expect phone calls and emails in the near future.

The Coyote's Hockey event is around the corner.  We can't wait to see everyone this Sunday for the game.  There are still a few tickets available.  Contact Lois Exley directly for more info. at (480) 664-6893.  Thanks again to the Exley's and those who participated...see you soon.

Sarah and cousin Sean both had recent bouts with Strep and such.  Despite a few rough days, everyone is on the mend and back to having fun.  Noah has sidestepped this so far, and we hope the daily antibiotics that he takes for his overall immunity should fight off these strains.

Take Care!

Weekly Activities

Normalcy is bliss!  We've been doing the park, sleeping in mom & dad's bed, hangin' out with Auntie and cousin Sean, jacuzzi time, and grillin' out.  Oh, the simple things we've been deprived of....

We're rather busy starting today - so, no rest for the weary.  Noah begins Radiation treatment next week and our next few days will be spent preparing for the event.  Here is what's ahead:

Today:  Echocardiogram - initial results show that Noah's heart is getting stronger everday.  High dose chemo has taken a toll on a majority of his organs, but fortunately the heart is reparable.

Tomorrow:  CT scan - this will provide the radiologists with a good anatomical picture for their field and alignment calculations.

Tuesday:  Simulation - the technicians will do a dry-run of the therapy with Noah on the table

Wednesday:  Radiation begins!

Noah's treatment will be performed twice a day for 7 business days.  The therapy will only be focused on his primary tumor site - right adrenal area.  We are thrilled with this news, because we may have been faced with brain or full body irradiation given the degree of metastatic activity.  The radiologist will be using the IMRT methodology which will reduce the stress on the right kidney.  As with many of our decisions, there will always be some compromise.  Organ exposure is a concern with radiation therapy, but we still feel this is the a critical component in Noah's protocol.  Side effects will include fatigue and nausea, but it should be nothing compared to Chemo/transplant.  Noah is excited that it won't cause his freshly grown-in eyebrows and eyelashes to fall out.  He is ready to grow his hair out, so it should be fun to look at now and then pix come 4 months.

From there, it's off to NYC again on February 5th for the 2nd round of antibody treatment.

All for now!  Con amor~

      

The Big Apple – Trip #1

The gang headed for NYC last Monday while Sarah enjoyed an extended sleep over with Grampa and Gramma.  They reported into Sloan Kettering first thing on Tuesday morning to begin the first of potentially many two-week sessions of antibody therapy.  Side effects from this treatment differ from high-dose chemo in that it can bring on a high level of physical pain caused from the antibody attachment to the neural system.  The pain can be only partially controlled with narcotics.  Fortunately, this pain only lasts 15 -30 minutes.  He is also experiencing some residual pain in his feet and hands for 2-3 hours after treatment.

After he makes his daily recovery, he usually has enough energy to go hit the town before dinner.  This has included subway trips down to Rockefeller Plaza to peruse the Nintendo World Store, cab rides to visit Jaye Bea’s family for dinner or a quick trip to the corner for a NY hot dog, slice of pizza or a bagel.  This weekend they met up with Jaye Bea and her kids to ride the Staten Island Ferry, see the Statue of Liberty, and play in a Mario Brothers Strikers tournament (Game Cube soccer game) at his new favorite store.  He was the youngest kid there by 4 years and he managed to hold his own.  To boot, he was a great sport when he lost...and told his opponent "Good game dude...you had some nice moves!" and then continued to give the boy the congratulatory 'knuckles" handshake.

Overall, Noah continues to amaze us all.  His mental and physical endurance/strength is off the chart again on this latest adventure.  Best of all, he is making the most of this experience and having a great time in the city!  When Noah has a good time, we all have a good time!

Love to all!

AGN